Down Syndrome-Autism Connection™

Welcome to the Down Syndrome-Autism Connection

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Providing Education, Support & Inspiration for the
DS-ASD Journey
 
 

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The Down Syndrome-Autism Connection™ is the only nonprofit organization dedicated solely to co-occurring Down syndrome and autism spectrum disorders (DS-ASD) in the United States.  The Connection was founded in 2007 as a collaborative project by parents and professionals seeing a great need to reach out to families and individuals affected by DS-ASD.  In 2011, we became our own non-profit organization.  While we are headquartered in Colorado, we care deeply about your journey no matter where you live.  In this age of accessible technology, we are able to support people from coast to coast, and even overseas.  We are gathering a global community in support of those with DS-ASD.

If you are a parent wondering if your child (or adult child) may be affected by an autism spectrum disorder, we want you to know that you are not alone.  Whether your child actually has a co-occurring diagnosis or not, we hope that you will find this website of great value as you search for answers and support.  If you are a professional wanting to learn more, we are here for you, too!  Please send us a message and sign up for our e-newsletter by clicking on the
"Contact Us" tab above. Thank you for joining our DS-ASD community! 
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Feedback:
Why do you need a community that understands your journey with DS-ASD?


"Because we feel like we don't belong in either 'camp'. My son's peers with DS are so far ahead of him, and the kids with autism seem to function highly but have other issues.  It's a whole other ballgame."

"It seems to me that when you combine the two, it becomes a completely different, new condition. You can't make any assumptions based on what you think you know about either condition. We all need to learn more about this co-occurring diagnosis. Thanks for trailblazing this important issue for my benefit as a therapist, as well as for the families I serve who feel really misunderstood."

"I'm so happy that I found you! I've needed you for 15 years!! I can hardly believe that I don't feel all alone anymore. I am truly so grateful. Thank you for starting this organization."

"We teachers need more information about our students with Down syndrome who are exhibiting signs of autism.  We need to know how to provide better learning strategies and not just lean on what has worked well for other students with DS. The children I have had in my classroom with DS-ASD seem to have completely different needs and behaviors - some of them very challenging. We care and we want to learn how to help."

"Having a place where people 'get' us is so important. We don't have much of a social life. Friends are rare. Finding other families like ours is a lifeline I can't afford to lose."

"I think a lot of people don't understand...either they don't believe the two can exist together or they just don't think about all the implications of having both. It's easier to connect with others who have similar experiences." 

"My son is 8 and we have been unaware, really, of the impact that this dual diagnosis has had until now.  I can't tell you how many "lights" have gone on in our minds to realize that so many of his behaviors/struggles are related to autism, rather than DS.  We are thrilled to be able to begin to re-direct/re-focus our efforts to help and teach and encourage him!!"

"As I begin this journey, I'm so very grateful that there is a place that can encourage, support and understand us."





 

Upcoming Events &  Announcements

We wish to express our gratitude to the NDSC for inviting us to partner with them at their Annual Convention -- for a 2nd year in a row!  All of our workshops were received with a great deal of enthusiasm and a strong feeling of "community".  We were able to provide support and education to hundreds of family members and professionals regarding DS-ASD issues. 
Read more here.

We wish to thank the following gracious presenters for sharing their expertise on our DS-ASD track:

"What Autism Looks Like in a Child with DS"
Susan Hepburn, PhD, Associate Professor, University of Colorado School of Medicine, Director of Research for JFK Partners, University of Colorado School of Medicine, Aurora, Colorado 

"Common Behavior Issues in Children with DS+ASD"
George Capone, MD, Research Scientist, Director, DS Clinic and Research Center, Kennedy Krieger Institute, Baltimore, Maryland

"Visual Strategies for Success: From picture cards to video modeling, a broad spectrum of techniques to help your child with DS-ASD succeed"
Susan Ellis, BSAC, Co-Founder, Director of Operations, The TV Teacher, LLC, Marietta, Georgia

"When Down Syndrome and Autism Intersect: Gaining a Better Understanding of DS-ASD"; "Sharing Session for Parents"; "DS-ASD 101: Understanding the Basics of Co-Occurring DS and Autism"
Margaret Froehlke, RN, BSN; Sarah Hartway, RN, MS; Robin Zaborek, all representatives of the Down Syndrome-Autism Connection









We also wish to thank the leaders of our Massachusetts chapter for co-presenting and co-hosting the entire track with us.
 They provided videos of their beautiful children for our presentations, as well.  Erin Knyff,  Jeanne Doherty and Charlotte Gray. These ladies seriously ROCK!!
 


Our First "T21 Fun Run & 5K" was a BLAST!

Saturday, June 7, 2014
Road Runner Sports Westminster, Colorado

Thank you to everyone who came out to run or walk, and to those who supported the Connection by donating! We truly appreciate all of you!!  See a slideshow of the event here.


We are already forming teams for our upcoming "T21 Road Rally" on Saturday, September 6th in Denver!
Ever want to participate in one of those insanely fun "Amazing Race" type of events?  Now's your chance! 
Become a participant, corporate sponsor, or volunteer!
Click here for more details.

Follow Our Blog 
Check out our new blog and share your DS-ASD journey!  Read about other people's experiences and share your own joys and challenges.  

Join our WORLDWIDE Support Group!  
We have switched from a Yahoo! group to a CLOSED Facebook page.  It's brand new and already wildly successful!  Please click here to request to join the private support group via Facebook. 


Read about our group in Massachusetts. 
Please join us in welcoming our first chapter of the Down Syndrome-Autism Connection!  Read more here.
Interested in exploring the possibility of developing a chapter in your area? Contact us to learn more.